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Swedish diagnosis very similar to ME

This might be of interest I believe? Sorry for bad grammar. If I was healthy I would have put in the necessary effort to write after a more academic standard.

In my country we hade a diagnosis called "exhaustion syndrome" (ICD-10 code F43.8a). The symptoms are very similar to ME, but one criteria is that there has to have been stressors in the picture for the past 6 months. This is the diagnosis I have so far. But my research shows that there is no mutual international understanding of this diseases. In Norway they actually say it is the same thing as ME. BUT many patients with exhaustion syndrome do recover, but it sometimes takes years and rarely 100%. In US it is sometimes mistaken as a burnout, but in Swedish studies they are not seen as the same diagnosis. We also have chronic fatigue syndrome as an official diagnosis. I'm chocked of how confusing this is, and I can see that even the researchers and medical staff are confused. The exhaustion syndrome is a quite new diagnosis (somewhere in the 1990 when so many people got sick). Very few studies has been done, but the diagnose is highly common in Sweden (everyone knows someone who's gotten sick. It is so common we have a saying for it "went in to the wall".). In one article published in the doctors magazine (a newspaper for medical staff) they speculate that ME and Exhaustion syndrome are the same and also bring up this confusion. Here is the article: http://www.lakartidningen.se/Functions/OldArticleView.aspx?articleId=12353

Criteria for exhaustion syndrome:

"Physical and mental symptoms of fatigue for at least two weeks. The symptoms have been developed because of one or more stressors that you have been exposed to for at least six months.

The most prominent is a clear lack of mental energy. This can be seen in reduced entrepreneurship, reduced stamina or prolonged recovery time associated with mental strain (people with the diagnosis often feel misunderstood because of this criteria when they bring up the physical strain which are highly common).

At least four of the following symptoms have occurred almost every day for two weeks:

Memory Disorders
Concentrations problems
Clearly reduced ability to handle demands or to do things during time pressure
Emotional lability or irritability
Insomnia
Clear bodily weakness or fatigue
Physical symptoms such as aches, palpitation, chest pain, stomach ache, irritable bowel, dizziness, and sensitivity to sounds, light and scents.
Your symptoms cause a clinically significant disorder or impaired function in work, social or other important aspects.

The symptoms do not depend on any substance (such as drug addiction, medication) or any somatic disease / injury (such as hypothyroidism, diabetes, infectious disease)."

According to Swedish specialists on the syndrome one common symptoms is also sensitivity to infections and new or worsened allergies due to immune system being weakened by long term cortisol damage. Source: https://www.stressmottagningen.nu. Common complaints can be "I feel like I'm about to get sick but I never become sick" or "I have this general feeling of being sick or feverish".

But this is just the official criteria. When speaking to other people with the diagnose you quickly understand that the symptoms are highly individual and much more complex. Most patients will get bedridden for the first weeks/months. After that it is not unusual depending on severity that crashes come with mental or physical strain.

The problem is that PEM also comes with exhaustion syndrome - one criteria is: "prolonged recovery time associated with mental strain (people with the diagnosis often feel misunderstood because of this criteria when they bring up the physical strain which are highly common also)."

One subgroup can handle physical strains but not mental though. It depends on severity.

It would be great if doctors could give us a quick, definite and correct diagnosis. Unfortunately, as you have discovered, there are a number of conditions that are very similar to each other with great symptom overlap. Even the best researchers and doctors haven't yet worked out what's what. So for now it's probably more helpful to concentrate on the symptoms rather than the exact name of your condition. Example: you may have PEM. In this case you look at all the conditions that feature PEM (like ME and maybe your 'Exhaustion Syndrome' - I don't know that one) and see how patients deal with it (e.g. pacing, resting). Then you try these strategies to see if any work for you. Yes, this is a long, slow process of trial and error but definitely worth it.

It would be great if doctors could give us a quick, definite and correct diagnosis. Unfortunately, as you have discovered, there are a number of conditions that are very similar to each other with great symptom overlap. Even the best researchers and doctors haven't yet worked out what's what. So for now it's probably more helpful to concentrate on the symptoms rather than the exact name of your condition. Example: you may have PEM. In this case you look at all the conditions that feature PEM (like ME and maybe your 'Exhaustion Syndrome' - I don't know that one) and see how patients deal with it (e.g. pacing, resting). Then you try these strategies to see if any work for you. Yes, this is a long, slow process of trial and error but definitely worth it.

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Absolutely I wrote about it because I think it can be of interest here on the forum. I find it very interesting from different angles. If we go with the norwegian interpretation that it is stress induced ME, how come many improve and experience remission for an example? Maybe stress induced ME are a subgroup? Just speculating of course but it's interesting. We have CFS as a diagnosis here too so maybe we have two official diagnoses for the same disease.

I'm not sure what you mean about the "Norwegian definition", @Alexandra90 Patients in Norway gets a CFS/ME diagnosis by either their primary physician or a specialist. Canadian criteria is recommended. Patients that "only" suffer from chronic fatigue are usually told they have idiopathic fatigue, or "burnt-out syndrome".

It's a tautologic nightmare. To answer your question, exhaustion syndrome seems like somewhere along the line the Swedish medical establishment was recognizing the long term effects of stress, and tried to reconcile that with mild CFS into a diagnosis. The diagnoses are attempts to recognize patterns before we have better objective ways to differentiate complaints.

I think Exhaustion Syndrome is likely the same thing as Post Viral Fatigue or "Acute ME"/"Acute Fatigue Syndrome". There are people who recover from ME in the first two years, often without a formal diagnosis or ever knowing what they had.

If you look at the Dubbo studies, following an infectious trigger (they use EBV and Q river virus) 12% were still sick at 6 months, 7% at one year and 4% at two years. That means that 66% ill at 6 months eventually recover. This correlates well if you take the number of people infected by mono (for lack of a better initiating disease indicator like coxsackie B which is rarely diagnosed), and then take 4% ill at 2+ years. You get a number that roughly corresponds to the percentage with diagnosed ME/CFS.

I think this also explains why so many doctors tell post viral fatige patients they'll recover in 1-2 years as statistically that's what they see, and those that don't won't always go back to that doctor.

Why this happens who knows. My theory is that a) the body eventually gets on top an infection and clears it b) autoimmunity / autoinflammation calms down c) metabolomics feedback loops don't get irecoverably out of hand. I imagine luck plays a big role, as does copious total rest, nutrition, and specific medical and supplemental interventions to support healing

I'm not sure what you mean about the "Norwegian definition", @Alexandra90 Patients in Norway gets a CFS/ME diagnosis by either their primary physician or a specialist. Canadian criteria is recommended. Patients that "only" suffer from chronic fatigue are usually told they have idiopathic fatigue, or "burnt-out syndrome".

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In Norway they say exhaustion syndrome and ME are the same. So they diagnose all patients with ME.

It's a tautologic nightmare. To answer your question, exhaustion syndrome seems like somewhere along the line the Swedish medical establishment was recognizing the long term effects of stress, and tried to reconcile that with mild CFS into a diagnosis. The diagnoses are attempts to recognize patterns before we have better objective ways to differentiate complaints.

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Very possible. But I don't know if I would use "mild cfs" as an explanation because many patients are severely ill. Some get bedridden or housebond for years unable to wash themselves or remember the names of their childen. Intolerance to sounds, light and difficulty walking because of the physical weakness.

In Norway the term Chronic Fatigue Syndrome is widely used as it is in the U.S. ME/CFS, CFS/ME and ME are also used. It means the same thing. Canadian criteria is recommended. I think the Swedes who wrote that article misunderstood that "Kronisk utmattelsessyndrom" or Chronic Fatigue Syndrome is just another name for ME. I'd prefer that they used ME instead, but since they mainly use the same criteria there isn't a clinical difference.